Pancreatic Care at Home

Attached is a letter I received yesterday. Below, I have responded. Please keep in mind that I can only share my personal experience. I have no medical expertise and am not giving a medical opinion nor am I qualified to do so. What I can do is share my pancreatic experiences and how I've deal with it.

This is my third acute pancreatitis attack. The two previous ones i was hospitalized. I am currently having one know, very severe pain and i am awaiting my lab results from my doctor. i told my doctor i would like to try to stay at home during this one and he did prescribe some pain meds but he did tell me regarding the diet...to only eat carbs and no fatty foods.

I know that when i eat something the pain increases for awhile but I am not sure other than the increased pain, what the effects are of eating. I am drinking only water but in small amounts. I did try broth and jello but even with those i felt increased pain.

I am not sure what to do at this point. Since I do not want to be hospitalized again I do not have the IV fluids to help sustain me nutrionally. Is it ok, if I am willing to tolerate the increased pain, to eat a small light meal and then stick with the fluids for other meals?

thank you,

cynthia

Hi Cynthia,

Thanks for your thoughts. My heart goes out to you and what you are going through. I completely understand not wanting to return to the hospital. I have sworn that I will never return. It was a nightmare experience. I also think that I was told to eat a large meal after a couple days of feeling better which after eating the meal did horrible things to my system and perhaps cause scar tissue that I might not otherwise have to live with now and which affects me on a regular basis.

That being said, I do my best to keep my health in a state where I might not feel that I need to be hooked up to an IV. As stated above, I'm not a doctor so I can only share what I've learned and what I feel about pancreatitis.

I have heard that when you have an attack it is important to let your pancreas heal. The way the pancreas heals is by not putting things into it which then allows it to heal rather than work to process whatever you might be eating and drinking. To fully let it heal one needs to be hooked into an IV. This way nothing is going through the pancreas and it can just spend time healing itself.

Since you don't want to go into the hospital you'll probably want to be ultra careful as to what you put into your system so that your food and drink intake is as light as possible and will hopefully not be too stressful on the pancreas.

Acute pancreatic attacks have a very high mortality rate so it is incredibly important that you read up on it and learn everything that you can so you are aware of the danger signs. The main problem is organ failure. In my particular case, the low rate of my heart beat was a constant concern and I spent much of my time pacing the hospital halls with my IV just to keep my heartbeat up and to keep my heart from stopping. Other organs that can become damaged or destroyed include the kidney, liver and lungs.

I've been having some pancreatic issues recently that I've been trying to keep under control. This means I'm having a dull pain in my pancreas. It's fairly common. It might go away completely if I stopped drinking coffee and if I hadn't had quite so many acidic, fatty and spicy things lately.

It is important to understand your diet and respect what your body needs, wants, doesn't need and doesn't want. No one is perfect... and sometimes we get hungry even when we know it will hurt our body to eat.

I do not take painkillers ever nor would I. It is very important to me to know if my pancreas is reacting poorly to food and when it does to try to take better care of myself. If I'm on painkillers than I won't know how my body is reacting or what I can do to improve the state of my health.

I remember reading an article where a doctor made a statement about how little the medical professionals know about pancreatitis. What I learned from that is that I don't want to be their test rat. I'd rather explore holistic options. This disease isn't kind. Chronic pancreatitis turns into pancreatic cancer which is a very fast killer.

If you should be hooked up to an IV then it doesn't sound like you are ready for solids, particularly something as solid as starch.

Perhaps you could consider a broth diet for a few days allowing your pancreas to rest. Are you taking potassium and magnisium? When I was in the hospital, I would like the salt off potato chips and eat maybe 1 or 2, later increasing to 3-6 per day. My doctor said I probably needed the salt, potassium and magnisium which were in the chips and that these things were probably helping to keep my heart rate higher.

Since my pancreas has been bothering me over the past few days I've been trying to limit my food intake. I've had very little to eat (yesterday only potato chips) and am having as much broth and tea as I want. The day before I mostly just had broth. I also drink coffee which is not helpful and not encouraged.

I know it is difficult but if you can refrain from the meals and allow your pancreas to heal it might help. What do you think? You don't want to cause more damage and isn't that possible if you keep eating? It sounds like you want me to tell you it's okay to eat because you're hungry. You know the answer is to let your pancreas rest. If you let your pancreas rest now will be better sooner and will your pancreas heal faster? I believe the answer is 'Yes!'

Take the time to take care of yourself. You're not drinking are you? If so, then you need to know that it is probably the worst thing you can do for your body. Also, I believe that having a laptop situated on the tummy bothers the pancreas. I have never heard anyone say that. It is a personal opinion. The harm that drinking causes to the pancreas is not my opinion but the opinion of the medical world.

Water is good and perhaps the least harmful thing you can put in your body.
Tea and broth are probably next on the list.
Yogurt might be considered.

I drink a lot of Bolthouse Green Goodness. It is very filling and just a liquid. It seems to help keep the appetite at bay and has things in it that are good for the pancreas, I believe. Have you tried juices? If you can tolerate them fairly well then you might try the Green Goodness more often in smaller quanitities. First, you could try 2-4 oz, a half hour or an hour later have another 2-4 ounces. In between if you are hungry have some chicken, vegetable or beef broth. Give it a few days before moving on to mashed potatoes, if possible.

I hope that helps give you an idea of how another person with pancreatitis would try to deal with it. I'm not perfect and we don't always know what will hurt us. For instance, I just had dinner rolls and I'm noticing that my body probably isn't ready for them yet. Maybe I'll just go back to a straight liquid diet with a few potato chips for 2 or 3 days and see how that goes. I was on that for the past two days and apparently should stick with it for a couple more days. I'll also buy more green juice so I don't get hungry. It is very filling!

All the best. Let me know how it goes!

Thank you for all your advice! Right now I am on water only. I did try broth and jello the other day but found that the pain increased even with just that! That is why I was thinking, if i am going to hurt after having that, why not go with a light meal. I will try the potato chip thing but if it is mainly for salt, why not just eat a dash of salt here or there?

I saw my family doctor on Wed. (today is Sun) and I had bloodwork on Thurs. of which I have heard nothing about as far as the results go. The day I saw my family doctor my stomach was not yet swollen and distended. At that time he said as far as diet, just to stick with carbs and no fats. My reply to him was for several days i intended to stick to clear liquids. He did prescribe a stronger pain medication but it does very little to relieve this excruciating pain!

I am regularly on pain medication as I have two lumbar vertebraes that have no disc left in between them, it is bone on bone and at my age, there is no way I am undergoing any type of back surgery! Having worked for an orthopaedic surgeon, I know that even if the surgery is successful, I will be facing surgery every 2-3 years to break up scar tissue and adehsions. So while I do practice therapy excersizes, pain medication is often unavoidable for me.

Every since my first attack of acute pancreatitis, I have followed a low fat diet because my gastroenterologist warned me of the problems that my pancreas would have in processing fats. Too, I have followed a low carb diet because after returning from europe, my triglycerides were through the roof, even up into the 1000's! My family doctor told me that if they go over 500 again, it could trigger another attack. I also take Tricor along with the diet and my last blood test showed they were down to 220. I do however, faulter from the diets as no one can be perfect all the time and eating out can be extremely difficult to find something within both diets. So, I do have to have cheat days but limit them. Spicy foods I never worry about because I don't like them and have never tolerated them.

I have been monitoring my heart rate which has been running around 120 give or take a few points each time.

Where can I find this green goodness drink?

I am desperately trying to do the right thing and I am researching everywhere I can find anything but it is all very confusing and the doctor's are not good at offerring suggestions on the diets other than to say "low fat" and "low carb"

To be honest, with the amount of pain I am in, i am getting very little sleep due to the discomfort and not knowing which way to turn, not knowing how to find out if the other serious issues than can occur with pancreatitis are happening, I am at my wits end and just cry. I also suffer from depression so all of this is not helping matters!

Strange that you mention about the laptop thing, while I was in europe I laid with my laptop on my stomach frequently and I remember how hot it did get on my stomach!

I am doing my best just to get through each day and keep myself hydrated.

How do you know when you have gone from a few acute attacks to chronic pancreatitis? Too, I have read as you also mentioned, that very often chronic pancreatitis leads to pancreatic cancer. When and how should I go about requesting to be tested for that without sounding like a hypochondriac!

Again, I thank you for your advice and prompt reply!

Cynthia

i tried to reply in the blog to be posted but could not figure out what i was supposed to do with selecting a profile!

Hi Cynthia,

Hope all is well. The Bolthouse Green Goodness juice is something I buy at the local grocery market. It's thick, so take it easy with the quantity, especially at first.

As far as asking to be tested for Pancreatic Cancer... there is no reason you should ever feel like a hypochondriac. Very little is known about disease. Usually, doctors only diagnose Pancreatic Cancer once a person is in the final stages. Therefore, the doctors have either completely missed the disease previously or the disease was misdiagnosed. Both are very common. I would assume it is best to be very assertive with your doctor is not. In fact, you might want to find a doctor with experience in this area if you feel your doctor is not well versed when it comes to the disease of pancreatitis. Since this disease is rare and not a lot is known about it there is a good chance your doctor might have limited knowledge about it. Ask to be tested. Be aggressive. Pancreatitis is an aggressive disease. If you don't want it to win you will need to be diligent and more aggressive than the disease. So put on our boxing gloves and fight!

Below are some articles I found on Pancreatitis Care at Home:

PANCREATITIS: SELF CARE AT HOME
PANCREATITIS: HOME CARE
PANCREATITIS: LIQUID DIET